In the hospital AGAIN!

So we're back. Blake started breathing heavier and requiring more oxygen. He's actually been doing this off and on for the past few weeks. Dr.Kim kept telling me this was normal with Chronic lung disease and he really hadn't jumped to needing to much more. Well he started requiring almost a full liter he was already at about 60 percent then I had to bump him up to 80 Wednesday. So I took him to his pediatrion right away. She had us admitted at Kosair. We waited in an E.R. holding room from 5:30 to 10:30 before we finally got a room. He had really started belly breathing harder than usually. He always belly breaths a little. So Dr.Kim decieded he would go ahead and do Blake's cath . Dr. Kim thinks that it's all a lung problem right now but believes doing the cath will help if the lungs become worse or if he gets a respritory virus. His heart at least will be as stong as possible to help his lings fight it off. I don't know if his theory is completely correct. I don't think he's having heart failure right now. But I think Blakes strolling along casually toward that road. I think his hearts working harder and obviously that's going to kick the lungs into working harder. They have to constantly work hard. I believe this is why his diaphram is doing double duty and making him belly breath constantly.

So the cath was scheduled for 7:30 this morning. I was trying to remain positive. I thought it was nice that he was going to be the first to go so the docs wouldn't be tired or have their minds on the previous patient. But low and behold, as always Blake got kicked to the curb. A little baby just born a few days ago got sick during the night and needed to go to the cath right away. So they came and gave me an update around 10:30 they had to stop and take that baby to surgery right away. My thoughts obviously weren't on that baby because I said in my head 'good now they can take Blake to the cath lab,' but that baby might need to go straight back to the cath once the surgery is over. I'm thinking that the baby most NEED to go staight back as long as he/she makes it through the surgery or they would've been able to take Blake then. So I can't rut for the other baby not to make it, geez I'm not that selfish. But it is hard for me to sit here knowing Blakes exhausted and starving and not be able to do anything about it. I hate having to rely on other people and certain outcomes before my baby can be helped. I just want to be able to get up and do what ever needs to be done myself. I always feel this helpless feeling, which I utterly hate feeling when dealing with all these doctors. I feel like I shouldve when to medical school so I could help my son successfully and wouldn't 2nd guess my self all the time.

So hopefully they will get him in before the days over I think Dr. Kim is really going to try. I really do like Dr. Kim he's either Asian, chinesse, or something but he's not mean like Dr. Yang and I can understand him completey. I pretty sure he was born over here with us highly intelligent Americans :) If they don't get us in I'm guessing they'll let us go home for hte weekend and then come back at a scheduled time next week. This isn't a really recent pic cause my memory card at home but he was cute then like he's cute now!!

I'm so far behind!!!

Oh, My I have an hour before Blake's breathing treatment, which comes right before his attempt at taking a bottle then undoutedly we will both give up. Then I'll g-tube feed him. This whole course of events thats continues is why I haven't been blogging. If I do get a moment when I'm not seeing to Blake I feel guilty if I don't do house work of some kind. If I don't I just make myself more stressed out because it piles up and I myself nag myself. Let me tell you I'm a bitch to live with. If I happen to watch the Price is Right and actually watch it I have to listen to myself for at least two hours later (You should have mopped! Do you realize your shoes get stuck everytime you walk by the bedroom and did you actually look at the T.V. while watching it Bob Barker had a layer of dust an inch thick over his suit and tie!) Oh yeah I drive myself crazy! Enough about my inner nagging voices.

Blake didn't have to have his cath!!! He will probably have it before Christmas but the doctors felt they could wait a while longer letting him grow a bit more. So I'm okay with this the whole cath thing scares me after what happened last time. Obviously I don't want them to allow his arch to narrow to much but I'm not in a huge hurry to send Blake back to the CATH LAB!!

AHH, Blakes fussy so that will have to be all for now. Hope everyone has a great Thanksgiving!!!

I haven't dropped off the face of the earth, I swear

Alright I didn't get to go to Riley's. Here's my excuses, it was raining cats and dogs, my dad was going to go with me to help me navigate the directions but he didn't feel well, and I had Brandon. So since I didn't have anyone going with me I didn't want to drive to Indy(a place that could fit Corydon in one of it's many parking garage's) with my two favorite people in the pooring rain to a place I would be afraid to get lost in. (I'm not the greatest driver, but I'm better than my husband no matter what he thinks :) )

So Blake had to go to his pediatrion Tuesday because he desated and wouldn't recover completely. He kept hanging out around 81 percent to 84. Then he came back up to around 89, but never would stay over that and that was with me more than doubling his Os. He did this on Saturday but it didn't last long I called the cardiologist on call it was around 9 p.m. he told me to watch him. Blake was than already coming back up on his saturation. He didn't have a fever and he seemed fine other than the heavier breathing. Well it didn't happen again til Tuesday and it just seemed worse. Well the ped almost had us go down and be admitted at Kosair. After consulting with the his cardios they said I could just watch him and he'd have an appt with them the next day Wednesday vs Thursday his orginal appt time.

So they deceided to cath Blake on November 14th since last week Blake weighed 10 Ibs ( I was so pround up from 9Ibs 11 ounces from the following week) but this week he weighed 10 Ibs too. The whole desating thing and not gaining weight is motivation . But I also think they want to wrap everything up before Thanksgiving. The time before that Dr. Kim was thinking about doing the cath at the begining of December so Blake would be good and recover before the docs went on their two week Christmas vacation. I know they need down time it will help them be better doctors in the long run. It just weird to think about sceduleing possible life savings events around someones timeshared condo shedule in Miami or wherever. Of course i'm nervous after what happened at Blake's last cath. I keep motivating myself by telling myself that Blake is stonger and about 40% bigger.
I think he's doing better now that he's home. He loves to play in this play pen I rigged up this mat that he kicks it makes the sound of the animal he kicks or there's a key board pic at teh bottom that has a different nursery ryhym song on each key (like Mary had a little lamb) In fact I'm even a bit jealous of his closet that is every time my mom comes over she brings him a couple outfits. I wish I got the same treatment. Blake definetly has more clothes and shoes than me.
Hope everyone had a good Halloween I took Brandon and one of his friends they were both the scream character(of course they planned this) His friends mom actually bought Brandon's costume as his b-day gift. I forgot the camera no pics of that. But I have a pic of Blake in his halloween outfit. But I can't seem to upload any pic from home :(

2nd opinion

Sorry I haven't updated lately I tried earlier today but my computer went off line right in the middle of reading Noels posts. (I hate dial-up, but alas I'm a country bumpkin and that's all I can get out here. I hope everyone had a good weekend and a nice Monday. Tomorrow Blake and I are going to Indainapolis to Riley's cardiologist team. I had better luck with Dr. Kim last Thursday he had Blake come back Friday for a CT scan they didn't have to sedate him they just swaddled him while he went through the machine. Dr. Kim said they were able to get a good picture. We have an appt back in Louisville with Dr. Kim Wednesday. This week's better than last Blake had five appts last week two on Tuesday so we where busy all week. I'm taking him to Riley to get a 2nd opinion I hate to have Blake go through anymore tests than he has to, but if anything were to happen I don't want to look back and think I should've done more.

Not to switch subjects but I just wanted to give a shout out to my cutie pie step-son and let everone know he turned nine today. We let him have 3 friends over to spend the night Saturday they all seemed to have a good time. It seems when you get them together like that their appetitie doubles. I swear they about ate everything I had in the fridge and cabinets I need to grocery shop again.

Slow speed internet & Dr. Yang

I have attempted to post about 5 times now since I've been home but my dial-up keeps acting up in numerous ways. Well that was one good thing about the hospital it's wireless Internet. Their where many good things but plenty not so good either.

Having Blake home it's great much better than seeing him at the hospital. I'm just a ball of nervous about 90% of the time and I've had about 5 minutes of sleep in the past week. We've had 4 doctor appointments since he's been home and I also have visiting nurses coming to the house twice a week.

At his last doc appt yesterday they officially told me Blake's going to have another cath. I knew this was coming it will probably be in the next month to six weeks. This isn't what upset the doctor was adamant about sedating Blake at his next appt to get his echo. We had been in 3 different rooms during the 3 hours this appointment was lasting. Blake was tired and it was time for him to eat and so he didn't hold still for this past echo. He's 14 weeks old he's not suppose to especially under those circumstances. Well Dr. Yang is hard to understand (Yang need i saw more on why he;s hard to understand, I don't have anything against any of his doctors for not being American born and breed I just want to understand them when their telling me about my baby.) I don't think Blake needs to be sedated for his echo because of the doctors offices incompetence to schedule appointments correctly and I just don't want Blake sedated. Well I let Dr. Yang know how I felt I tried to be rational with him I really wasn't trying to argue with him. Well he got all flustered, 'You need lisssen ew me I wise Black (yes he refers to Blake as Black) need sedation to get picture good,' I said I'm not trying to argue with you he informed me that I was twice and stated I was being rude no joke. I swear I really was not trying to argue with this man. He just seemed in a flustered mode as soon as he saw Blake. If I had to describe his little tantrum how I perceive him, I swear it's like he's a little teenage girl on her period who just got dumped by the quarter back. This is how he was acting. But for Blakes sack I was trying to get along. Another Doctor ended up coming in Dr. Subcheck he agreed with me that Blake didn't need sedated if we where going to do that we might as well do the cath is what he told me.

Well when I finally got done feeding Blake in the waiting room and the whole ordeal was over I did cry a tad bit. I just feel awful that I might of put Blake (a.k.a Black by Dr. Yang) in a position to not receive the best care by Dr. Yang. But I do feel that I was just in not wanting Blake to be sedated I just wish I had had a less touchy doctor I believe I would have been better able to communicate my concerns. After the appt prior to this one Blake actually fell asleep during the echo. I brought that up to Dr. Yang to. That echo should have had great pictures. Please everyone tell me how you would have handled this situation. I just feel I shouldn't have let it get out of hand. I called when we finally got home and spoke to Dr. Subcheck and an office manager Blake won't be seen by Dr. Yang there are after all 9 their Drs he can be seen by. For some reason I feel Dr. Yang won't feel hurt when he finds this information out!:)

I would post a pic of Blake from his welcome home party, he looked so cute but my slow speed won't allow picture posting it seems.

By the way can someone let me know how do I put 'blogs I read' everyone elses link on my blog, thanks in advance.

Blake is a resident of Indiana, not Kentucky anymore, Yeah!

Blake's home it's been a little bumpy, but so so nice to cozy up to him at home and not in front of his nurse. Oh, and I don't have to drive 45 minutes to see him. All I have to do is get out of bed. Oh, he's right beside in his bassinet so or in his glider or swing AT HOME!!! I have to run sorry if I can't update for a while i'm sure everyone will understand!

Blake's Coming Home!!!!!!!!!!!!!!!!!!!!!!!

They took him off his Os Thursday but they had to put him back on because he started to desat. So they tried again a few more times that evening and early Friday but he started to desat again. He lasts about 3 to 4 hours than just sorta starts dropping around 70. He'll look fine content and everything, but his sat just won't stay up there with out a little help. So they got him on wall Os and I get to take him home hopefully Monday, but it might be Tuesday if they can't get his take home oxygen and heart monitor ready. My insurance was picky about which company they could go through. Well actually my insurance doesn't cover home oxygen for babies just adults! They just had to negotiate the cost. My advocate didn't seem upset that he would need it. I guess she just has to call everyone that provides home oxygen and find the cheapest rate. I'm not sure if they got everything faxed in time. Considering my nurse found a fax # by Blake's bed while I was there it was around 7pm Friday. She asked the other nurse what it was. She told her it was the fax # for Proxair(home oxygen) and that they needed some info faxed over for Blake's oxygen. I was just so happy with both the nurses at that moment really! So they told me today not to get my hopes up for Monday. Knowing Kosair Hospital it will probably be Tuesday. I'm so excited and nervous and just everything! I've cleaned the house like a mad woman a couple times and then I decided to paint the kitchen and living room. I guess I'm like in this nesting stage preparing for Blake. I hope everyone is having a great weekend. I am! Well besides being a big ball of nerves every other minute, I'm good :)